- Beloved “scientist” Bill Nye shares his family’s long battle with the degenerative neurological condition ataxia for International Ataxia Awareness Day on September 25.
- The disorder affects balance and “all fine motor movements,” Nye explains, sharing that symptoms are often dismissed as “carelessness.”
- Recent findings have identified the gene repeat behind ataxia — and as Nye says, “studying this may lead to other discoveries related to genes in general.”
Ataxia may not be as well known as other degenerative conditions, but as Bill Nye says, “If you’re in my family, you hear about it all the time.”
That’s because the progressive disorder runs in his family — descended from a colonial-era ancestor.
A neurological condition that starts in the cerebellum and causes problems with movement coordination, ataxia manifests itself in physical symptoms, explains the beloved “Science Guy.”
“You have trouble keeping your balance, you have trouble snapping your fingers — any fine motor movement,” Nye, 68, tells PEOPLE. “The other very prominent one that everyone complains about is the swallowing problem.”
“Scientist” Bill Nye explains ataxia.
Courtesy of Bill Nye
Because some of the early symptoms can be dismissed as clumsiness, Nye says, “You’re constantly questioning yourself: every time you lose your balance, you think, ‘Well, this is it, this is the beginning of the end, this beginning of this is the way I’m going to go from now on. live.’ ”
As he says, “My father would say 14 times a day: ‘It’s just inattention’: Just inattention when he falls, when something falls out, when you break a glass while washing it, when you have problems driving the car.” ‘Oh, that’s just carelessness.’ ”
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“But really,” he continued, “it was this incomplete connection between what he wanted to do and what his cerebellum or brain allowed him to do,” Nye explains. “And that led to all sorts of difficulties in his life.”
But for International Ataxia Awareness Day on Sept. 25, Nye says, there’s a breakthrough in ataxia research that could help not only halt the disease’s progression, but help identify it in others.
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“A year and a half ago, the gene repeat that causes it was identified,” Nye tells PEOPLE. “It’s been out of reach for decades.”
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The Nye family has struggled with ataxia for generations.
Courtesy of Bill Nye
It was during this time that he learned, “I almost certainly won’t get it. My gene, the length of my repeat sequence, is too short to cause this.”
The feelings, he said, were “two separate and parallel feelings.”
“First of all, ‘Wow, I’m not going to get that.’ The reason I can’t snap my fingers is really me.”
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“The other thing is the so-called survivor’s guilt that I am the third child,” he said, saying that both his sister and brother have symptoms of ataxia.
His sister, he says, uses a wheelchair and “spends a lot of time sitting”, while “my brother’s symptoms are clearly more pronounced as he gets older”.
“For some reason, repetition [I have] not long enough to cause these symptoms. With that in mind, I felt like I finally had something to contribute to society about this condition — that I could finally raise awareness,” Nye tells PEOPLE.
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“For people who have it, you don’t have to go to the world’s greatest authority to realize that you’re falling, that you can’t swallow, you can’t pick things up, you can’t pick up a paper clip,” he said, sharing his family’s ataxia symptoms are “pretty mild in compared to other people with other forms of ataxia. These others are really outstanding.”
And progress in ataxia, he says, may help other disorders.
“Feel free to donate to the National Ataxia Foundation and contribute to research because this is another genetic disorder—and studying it may lead to other discoveries related to genes in general,” he says. “Scientifically, this is a really exciting time.”
Categories: Trends
Source: HIS Education